The Life and Times of a Mutant

Small update...

2011-11-30T11:32:00.002-05:00

About 3 weeks ago I started feeling awful. It came in quickly and I'm pretty sure it is the flu. I'm dismayed that I can't kick this thing. I'm extremely bothered by the fact that everyone around me seems to be paniced over this...I mean most people get a cold or a virus and it is really not a huge deal. Me? I get it and it stays around for a while. I suppose what adds to the worry is that I haven't been this sick since before I was actually diagnosed with CF at 21. So everyone is looking at this as a huge back slide for me.

I've lost my voice, still have a cough, am wheezing like a 40 year smoker and still have a fever! I have no health insurance, but I think I'm going to see my primary on Friday, although I am honestly not sure what will happen after that. I can't be admitted at our local hospital, I don't have health insurance. Then next week I have my CF clinic; where I hope they admit me. But that rarely ever turns out the way I want, so who knows what will happen. My husband is positive my PFT's have gone down, and I have a feeling he's right. My muscles are just so sore from coughing, moving even hurts. But I've been trying to maintain a level of activity and doing some breathing exercises to try to help my lung function. I'm hoping that my PFT's won't have taken a serious hit because of this, a small one I can handle (I think).

Clinging to CF

2011-10-27T12:05:00.003-04:00

So after a discussion with my husband a few nights ago and some serious soul searching...I have come to a realization.

I've been in denial about this whole mitochondrial disease issue. I've been so focused on CF, and raising money and awareness that I have not acknowledged the other serious disease in my life. I've talked about it, sure; but I've done little to fund raise or spread awareness. (At least compared to the stuff I've done for CF)

It occurred to me with VX-770, that a pill for me might be around the corner and I got excited. I've spent a lot of time this week going over stuff I'd like to do, going back to work is one of the things on that list. But then I realized...I'm not working because I get frequent infections, I don't have the energy and my muscles cramp and ache. According to the mito information; those things can all be caused by mitochondrial disease. I knew my muscles were a result of the mito but I kept telling myself everything else could be CF related.

To clarify; I didn't delude my self because CF is less serious in anyway shape or form. I did this because I can explain cystic fibrosis. Because when I tell people I have CF and they ask, "What's that?" I can actually answer. When I tell people I have a mitochondrial disease 95% have no idea what I'm talking about. And when they as, "What is that"; I explain as best as I can a disease that my doctors don't even fully understand. People look at me like I use this as an excuse to be lazy...so I only discuss it with people who already know me and understand mito. When I meet people I don't say "Hi I'm Chrissy and I have two genetic diseases". When health comes up I usually just say I have CF and another genetic disease that is not well known. If people pry by asking what it is, I tell them it is a muscle disease. It sounds better than saying, "It is a disease in which my body doesn't produce enough energy on a day to day basis. So the symptoms can vary from person to person."

I mean typing it, it reads as a straight forward answer...I just wish it was so straight forward that people would not judge me.

Conserving energy

2011-10-17T22:39:00.006-04:00

I haven't blogged in a while, mostly because I haven't had the energy. Yeah...that's right. I said "energy". It takes a lot for me to sit down and organize my thoughts here. I have found myself; lately, having to pick and choose my activities a lot more carefully. Here is a list of some of those things that I have to choose between most days:

Things that take energy
1. Getting out of bed
2. Getting a shower
3. Getting dressed
4. Coming down the stairs
5. Getting my medicine together and prepping treatments
6. Going into the kitchen to get something to eat
7. Eating breakfast
8. Cleaning up after breakfast
9. Going to the bathroom
10. Making phone calls
11.Logging in to school and participating
12.Walking back from the kitchen to the sofa.

I think you get the idea (a few of these I have to do more than once). Some days I wake up and can get 5 or 6 things done while others (less often) I can maybe even help out by starting a load of laundry or *gasp* I might have enough energy to spend some time with friends.

I do not consider myself a lazy person, but I'm not sure how many of my friends and family actually get how much energy it takes me to do the smallest task. Yesterday I had to take a shower with my husband, not for anything kinky mind you...but because I couldn't wash my hair. I'm not kidding either. Most people don't really know how bad it is because I honestly don't talk about it much.

I just feel bad about it. Embarrassed. Frustrated. Angry. I would rather not get the looks filled with pity, or they say "What about trying this or that?". My condition isn't something my doctors seem to know much about so, I don't like trying to explain something that even the "experts" have problems understanding.

These things are why when I have the energy I'll take my daughter shopping (even if I have to keep her out of school). This is why when friends or family call and ask for help or say they want to spend time with me--I'll move heaven and earth if I have the energy.

Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition

2011-07-29T16:32:00.006-04:00

So yesterday I read the blog of a friend:
http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html
She posed a challenge, so I will do my best to answer her questions in hopes to reveal my outlook on cystic fibrosis to any who are curious to know what I think.

"1.Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions."

I wasn't diagnosed until I was 21, so I grew up sick. Although I wasn't just a sick kid; I was the sick kid that no one believed. I would complain and get accused of being lazy; trying to get out of school or some other obligation; or selfish. My parents say that they always knew something was wrong with me, but I think with no answers from the doctors that they started to doubt themselves. When I was 16 and needed my gall bladder out; I think everyone finally realized that I was sick and when they diagnosed my with pancreatitis they knew some thing had to be wrong. But it still took 5 years for them to figure out what it was. This was, for the most part, because as a child we did not have health insurance and honestly the information out there about CF was (at that time) minimal. Everyone thought that you had to fit into specific symptoms...boy were they wrong.

When I was diagnosed I was so happy to have a name, and I foolishly thought that meant we could start to fix it. After some research and a meeting with my CF doctor, I was terrified. I mean; all of the sudden I wasn't just sick I was dying. At least that was all I could focus on.

Life expectancy...

It took years for me to accept that I was as sick as they said, to want to fund raise, and to look beyond the dreaded "life expectancy." I had to figure out on my own, through research and joining a few CF support groups online that CF is different for everyone.
Sure it is progressive, but we all have different rates of progression. So I feel that it is inaccurate for doctors to tell patients (or caregivers) that they have a "mild" CF. There is no such thing, there can be mild symptoms but not mild CF. At least that is the conclusion I came to after meeting others with CF online and talking with my doctor.

Do I think CF is controllable? Not really. I mean certain aspects could be, like taking medication and using your vest; but the other aspects that cannot be controlled are genetic factors and in some cases environmental factors. You could pick up a bacteria at the beach or a friends pool, but also by using a public restroom or water fountain. So unless you put yourself in a bubble there is no way to protect yourself from every factor. Additionally even if you are extra careful and your best friend comes over to visit they could be caring a bacteria they picked up (at a pool, hot tub, or by sharing a drink with someone else). Not to mention those friends and family members who still visit with a runny nose or a cough. (even if allergies is the cause you are still spreading germs and bugs; you do still have germs in your snot!)
So I think we all have to do the best that we can, but not expect an easy road just because we are compliant and/or we exercise and take really good care of ourselves. Kinda like you can't win the lottery if you don't buy a ticket; you can't avoid getting a CF bacteria unless you don't have CF. (There are just too many factors, in my opinion) But I should say that I do think we need to work on what we can, influence the factors we might had sway over (environmental) to improve the health we do have.

I think it is crazy to lay blame on another CFer for getting sicker; because it is impossible to know all of the factors. The CFer themselves may not even be aware of all of the other factors. I don't think laying blame or judging helps in any situation; but especially not when dealing with an illness.

How do I stay positive?
I still find myself in a bit of denial every now and then; I am very self conscious about being sick. That, I'm sure, is because of my childhood. So I tend to try to do as much as possible to be "normal"; but in the end that is just a fancy way of saying I do too much to attempt to make up for the extra efforts of everyone else. I hate it when people have to do more, because I can only do 50% or less. (This is one of my biggest flaws.) To stay positive I:

1. Blog. I have this blog and another one (On the bright side); this one helps me vent, and the other I use to list my many blessings in life.
2. I take pictures and I cook. They are little things I do that help me be creative.
3. I cry. I used to think it made me weak. But I find that a good cry helps me "get it off my chest."
Last but not least, I am a very spiritual person. I'm not saying that is the only way to cope, just that it is helps me to cope. I don't go to church every Sunday, but I do not think God worries about physical attendance. The thing that matters is how we treat each other, not what church we go to. But again that is only my opinion.

So that's my input! I'll pass this on to my friends who read this CF or not. Here are the "rules."

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Another week come and gone...

2011-07-16T23:43:00.004-04:00

So this week has been a busy one, but we all managed to get through it fine! Kate got sponsored for a cooking class this past week, and she got one for a class in August too. I’m so excited for her, although I think my legs might need a vacation afterwards! But seriously, Kate has this opportunity to work with an amazing chef; so I’ll do what I have to do to make sure it happens. I know moms brag about their kids but I really think I have a wonderful, talented, and awesome daughter.
Other than that I had NIH this week, and things went ok. Frank has started taking me and when he can’t my brother does. I can’t drive that far anymore. Anyhow he isn’t used to getting the run around or the, “we don’t know what to do with you speech”; so if you ask him how the appointment went it was disappointing. I guess I should feel that way too but somehow I just can’t find it in me anymore to get upset. I mean don’t get me wrong I do spend many a night crying over this whole mess that is my health, but that is out of frustration, I think. Maybe it’s disappointment too…???

So my CF doc tells me about an undiagnosed disease clinic that is at NIH, and she wants to try to get me in. I’m all for that, it seems like NIH discovered these “novel” mutations and then a few years later decided it was too much work to keep up with. At times I feel like a bug in a jar, but I must be an uninteresting bug because they don’t even seem to be watching me anymore. So while I do have hope that NIH might come through, I will not be surprised if they don’t.
I suppose I should get used to the idea that no one will ever really understand me medically speaking. It’s difficult for me to explain to people what I have because while it is a mitochondrial disease, they cannot tell me anything more specific. The only thing more frustrating; to me, than having an invisible disease is having to tell people that you have an unknown (invisible) disease.
So tonight I’m sitting online and relaxing typing this blog post and playing on face book. My sleep schedule has been thrown off. I didn’t take pain meds all week, as I was driving, so know that I’ve taken one it’s keeping me awake. Frank is up stairs drawing, but I think I’m going to sneak in and go to bed!

The truth about batteries

2011-07-05T09:43:00.011-04:00

Since my last blog I have been trying to be more honest, and while it is getting easier - I still find myself sugar coating things for people. Its not that they don't understand but sometimes - they don't understand the depth of it (does that make sense) Not that it something everyone understands, hell even the NIH in Bethesda doesn't understand my mitochondrial disease.

The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)

Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:

So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.

There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.

Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.

honestly sugar coating...

2011-05-23T10:54:00.003-04:00

Today I got to go out painting with the gals and had a good time. I have been in sort of a funk these past few days, but today cheered me up!

May is cystic fibrosis awareness month, so I decided to post random CF information on my face book page in hopes to increase awareness. I even thought that if I was honest on how I feel everyday (for the month) that maybe my family and friends who did not quite understand might understand a little better. But that task was a difficult one. I don’t usually like to post things about my health (specifically relating to me that is) because I’m usually not feeling energetic , often times my sinus’s are really causing me problems and well, most of the week my muscles hurt. Whenever I’m honest, it feels almost like I’m complaining…
So my dilemma is should I be honest or sugar coated?
Being honest ensures that there will not ever be a doubt about my health or how I feel. There will be no chance of denial from my friends or family. No chance for them to make comments about my CF being different from regular CF and no chance at any them being able to say things like, “I didn’t know she was sick” or “I had no idea she had that problem.”
Sugar coating allows me to be able to appear “normal” or “healthy” at times when I’m not. Since I have an invisible disease people can’t always tell when I feel less than 100%. I would probably still not get the support in my endeavors to cure CF or mitochondrial disease that I would like and I doubt any of them would rank it as a top 5 priority in life because after all, Chrissy doesn’t suffer too bad.
So I am thinking maybe I can mix the two?
Be honest but not blunt, be optimistic but not delusional, and be upfront be not completely open. I am usually pretty open about my health when it comes to my husband or the cysters and fibros I have met on line but for some reason I’m not able to be that open with family and friends.

So for all of my friends and family (and other people who read this blog)…
If you don’t want to really know how I feel… don’t ask. I don’t like feeling like I’m complaining, I like to be positive. But some days I just can’t be. I can’t smile as often as I would like to, I can’t do the things I used too and I’m too tired to always put up a facade. We’ll use a code; ask me how the weather is…

For those of you who do want to know I will do my best to paint an accurate picture when you ask (although it will not be a vivid picture, lol, just accurate).

Playing catch up...

2011-04-12T12:07:00.003-04:00

My last entry was back in February; so I'm going to try to catch you up. I wasn't feeling well for a while. As I started to feel better my friend Chris offered Frank and I her condo in Ocean City for a week. So we decided; since we haven't been on a vacation in a while, that we were going to go! I really love the beach, a lot more than I did when I was younger. It is just a relaxing and peaceful, and our trip was wonderful. My little brother Pete went with us (as well as Kate of course) and everyone really had a great time! We came home to new living room furniture (sofa and love seat) which was nice, and then we all got sick the following week.

That brings us to today, where everyone is definitely feeling better! I'm excited about my birthday coming up (Thursday); I'll be 34. It seems like just yesterday that Kate was born and I got married! So this week I have been on a big gratitude trip. I am so thankful for my life, and I have been so blessed with my family and friends. Frank and Kate are taking me out for my birthday on Saturday, but I have no idea where we are going! I think they are going to blind fold me in the car! I don't get a hint either, when they asked what I wanted I said to spend time with them. So I'm guessing that's what we are doing, going to spend the day together. Other than that I have no idea! It will definitely be a surprise!

I also have to post about my daughter. Kate and I both lead teams at our local Great Strides CF walk, but last year I just couldn't participate. (I wasn't feeling well and my grandmother had just passed away) This year we were talking about it and Kate said she'd like to take over my team this year and lead it for me. So she did. She and I worked on a montage for the walk this year and so far it seems to have gotten a really good response!

Make video montages at www.OneTrueMedia.com

Dreaming big...

2011-02-17T11:09:00.005-05:00

Last night I laid in bed trying to sleep, but instead I was inspired to blog. Unfortunately I was too tired to get up and walk down the stairs and I knew that even if I could manage that I would not be able to go back up them. So I just laid there lost in my own thoughts.

What started me thinking?

I would have to say that Frank and I went to bed, and after getting in bed I realized my legs were itchy. Not bug bite itchy, but dry skin itchy. So Frank went down stairs to get my lotion, because he knew I couldn't make it down and back up again. So as I'm sitting there putting lotion on; I am reminded as to why I have dry skin that makes me itch. Not because it's winter, not because I take really hot showers or because of my medications; it is because my vitamins and minerals are low. It seems like every time I turn around something is reminding me that they are low. Like the cravings for tuna fish and turnip greens, and I don't mean craving as in "oh yeah that sounds good lets have that for dinner", I mean craving as in "OMG. I have to eat that right now, and if I don't get it I'm not really hungry for anything else".
I dropped my Critical Thinking class, because I can't think. Seriously, I'm forgetful and I get confused. So I decided that it would be a good idea to take a break. I have a clinic appointment next week and I'm hoping that NIH can help. I don't have health insurance so I am not able to get my IV therapy, which I really miss right now. I'd give anything to go it and be hooked up to a bag of multivitamin, trace minerals and lipids. So I'm hoping that some how my CF clinic might be able to help. I'm hoping that I can convince them to admit me for a tune up (you know you feel bad if you *want* in), but because this is all mito related who knows what they'll do. But a gal can dream, right?

I'm on E

2011-02-07T12:07:00.005-05:00

So I woke up this morning absolutely wiped out, I'm not complaining about it per say; but it has become my "normal" over the past week. I really want some turnip greens and a tuna sandwich for lunch. However, I am just too tired to make anything...except maybe a bowl of cereal! I have homework for my most recent online class, and I just can not rub two brain cells together today to get it done.

You know when your car is low on gas how it's kinda sluggish on hills and sputters? That is how I feel. That's really the only way I can explain it...I can not think of any other time I've felt this way. Even when I had mono (all 4 times) I did not feel so drained. I slept a lot but now...now... I feel awake but empty (if that makes any sense).

So I was just thinking about why I want tuna and turnip greens (although I could eat spinach instead...YUM)

Tuna:
Protein, Niacin, B6, B12, selenium, magnesium, and potassium. There is more included but it isn't considered significant enough in them to list.

Turnip greens:
Protein, vitamin A, vitamin C, vitamin K, calcium, magnesium, and potassium. (to name a few)

Actually I'd really like a baby spinach salad with tuna or I'd settle for a tuna sub with baby spinach on it! LOL...

Is that running water?

2011-01-30T20:37:00.004-05:00

So tonight is a wrestling pay per view and we have some friends over. Kate decided to cater and made spinach balls, hot tuna dip, home made salsa, stuffed mushroom caps, chicken and cheese quesadillas. I was the sous chef and helped her prep. Everyone finished about an hour ago, and I am sitting at the computer.

Why?

Well I have to go to the bathroom and I can't make it up my stairs. Seriously. I took a lyrica which is supposed to help and a muscle relaxer too. So far I got nothing. So I'm just kinda sitting here and hoping that I'll be able to make it after resting. I may have to crawl, which I have done before but not in a house full of people. I'm hoping it doesn't come to that. I'd be so embarrassed! Hell I'm even embarrassed that I'm limping around.

So onto non bathroom thoughts...I ordered a new vest from Hillrom and I really like it. I'm hoping that it will help me use the vest more often. The chest vest that I had before really only shook my front but this one does the back too, so here is hoping it works well. So far so good.

Other non bathroom thoughts include:

1. School. My class Paradigms of Health is almost over. I have really enjoyed it, and so far that's been par for the course for most of my on-line classes. Sure the group work drives me nuts sometimes, but I love the ability to do school work in my jammies and do treatments while participating in group discussions. Next class is Critical Thinking, and that is going to be interesting. Especially with my short term memory loss and confusion lately. LOL...

2. This whole thing in Egypt. Ok so I'm sure I am showing my ignorance here but after reading several articles, all I got is that the Egyptians want Mubarak to step down. I do not understand why people are rioting though (protesting I get). They're hurting Egypt, not helping. I'll be praying for the country to find peace.

3. Royal Rumble. So confused. I haven't really watched an episode all the way through in a while...so now...I'm playing catch up. Luckily it is being recorded on our DVR. I can watch it tomorrow, lol, with out all of the talking.

Ok I am going to try to make it...cross your fingers for me!

fear and death

2011-01-23T20:22:00.005-05:00

So today, I was feeling a little down thinking about those who have passed because of CF.I did not know any of them personally but being in the same support circle; I felt as though I did-in a way.It always stings when someone passes because of CF, but so far this year 3 have passed. 3. I just think of that number and I am scared out of my mind. Sad beyond belief. And that is only 3 that I had heard about my self. I am doing well lung wise. No recent chest infections or anything. My sinuses seem to always be infected lately, but I'm used to it. My muscles are always achy here lately--but I'm used to that too. My digestive system is still wonky, but mainly because we are trying to pin point what medication and how much I need. My joints have been bothering me which is new, and alarming because I have no idea if it is my mitochondrial disease progressing or if it is just because it has been so cold lately.

Anyway--it is all just a lot. The deaths, I mean. I can deal with pain or discomfort but death breaks my heart. I believe in heaven; but my heart breaks for those who are left behind. The sorrow they'll endure...I wish no one had to deal with it.

It's part of life, I know. It's not supposed to be easy, I know that too. I suppose I just think it is unfair that these people have to watch a loved one struggle and suffer...and then have to pick up the pieces when they are gone. I don't think it is fair. I think it is because I am close to friends and family that this bothers me so. Because I know one day it will be their turn. Their turn to watch and then to have to pick up the pieces.

January 22, 1920

2011-01-23T00:32:00.006-05:00

Up late doing school work! No worries though I have really decided that I am so lucky to get this experience, it is the best thing I have done in a while. (Not the best thing ever because that would be Kate!)

So January 22 my grandmother would have been 91 years old; I can hardly believe that she is gone even though it has been 9 months since she passed. I still miss her like it was yesterday. Frank, Kate and I went to her grave, I was afraid that if she thought I forgot she might haunt me! LOL One year my dad forgot her birthday and she had a fit! She never let him live it down either. I was going to take her a bag of dor-et- toes (the way she pronounced Doritos) but decided against leaving a bag of chips on a grave.
My mother in law has to get IV therapy to boost her immune system, and despite having not been to the therapy center in almost a year--the girls still remembered me. I'm happy the did, because I still remember them. I'm really hoping this insurance issue gets resolved so that I can go back for my therapy. It really did help me feel better. I complained about it a little while I was going--but after not going for a long time; I can really feel the difference. I'm a little jealous she gets to go! I hope they help her to feel better.

2011

2011-01-02T14:17:00.004-05:00

HAPPY NEW YEAR!

Christmas got a little easier after my last blog entry. Maybe I just needed to get it out. Anyhow, we spent the New Years at a friends house, and she had a fondue dinner (appetizer, main and dessert) and then on the first day of the New Year we went over to spend it with our family! All in all everything has been going pretty well...except...I'm sick. Not just blah either- I'm uber bitch. My sinuses are so full my entire head feels like it might just explode if anyone else pisses me off. And that's the problem. Every little thing today seems to be annoying me. I just want to go back to bed and sleep.

I guess it all started last night, but I took some sinus meds and thought it was the cold air that was bothering me. When I woke up this morning I figured it out. My glands are swollen, my eyes are watery, etc.

I'm grumpy too, I usually do not get grumpy just cause I'm sick, but it seems like that's the case this time. I doubled up on my antibiotics, I think I have a sinus infection. Again.

Anyway- I am blogging today to wish you all a happy new year, not to complain! So I hope you all have a very happy and healthy New Year. 2010 is over, and while it was a good year for some people- it was awful for others...no matter which it was for you I hope 2011 is a good one!

The Ghost of Christmas Past

2010-12-22T09:23:00.004-05:00

It's all most Christmas, and I took me a while to get into Christmas this year. You know, the holiday spirit. I guess you could say I've got it know, but I still feel kind of blah. All my major shopping is done, just need to pick up some stocking stuffers. But I'm still not feeling all Christmasy, I maybe feel 65% Christmasy.

I spent some time last night thinking about this past year, and I think I realized why I don't feel it. 2010 has been not nice to me, and I'm feeling a little kicked. My Grandmother passed away this year, I lost health insurance, my muscle disease has caused more problems...I could go on...but it is pointless. It won't help me feel better.

So I have been trying to get in the Christmas spirit. I've been randomly listening to carols for short blocks of time. I've been eating cookies and other holiday desserts every day (sometimes twice). I've been watching holiday movies with my family. Nothing seems to help though, and I'm running out of ideas. My last class discussed depression and I fit the bill.

After my Grandmother passed I waited for my "break down moment" you know the one where I spend a day or two sad and mopey, the one where I eat everything in the house and cry a lot. But it just hasn't happened yet. So I'm thinking this might just be the root of my depression; everything else is good...my family, my friends...yeah some other stuff happened but I don't know if it was enough to throw me off my game. Not like this.

I just cannot let my guard down enough to allow myself to get upset, I'm used to being the strong one. I keep thinking of how we would go over every year on Christmas when I was a child; and then when Kate was born we took her over every year too. We had dinner there, at least until I got married and had Christmas dinner with my husbands family and Thanksgiving dinner with mine. I remember walking in and seeing that Santa had brought me Barbie's townhouse and the year I got the cool cabbage patch with cornsilk hair. I remember when I got older sitting in her turtle back chairs and listening to Christmas Music while GrandDonald cooked dinner. Some years we would tinker on the piano before dinner was ready.

I know I'm not the only one who has lost a loved one. I know others who have passed this year as well, but I do I hope that I am the only one having a tough time. I would not with this feeling on anyone.

Of Hope and Wars

2010-11-03T09:52:00.005-04:00

Yesterday was a beautiful fall day, and I went to Gettysburg with my mom and my brother Pete. I took a lyrica before we left and it seemed to help- although I am really sore today! It was just a great day; I got out of the house and took some good pictures. I enjoy taking them because when I look at them I can't tell that I'm sick. I know it probably sounds crazy but it's true.
Walking around the battle fields I was thinking of all of the younger people who lost their lives. This also made me think about my own mortality, and made me thankful for all of the blessings I have in life. I loose site of how lucky I am sometimes.

Then last night I got online to work on some things, and as facebook came up I saw a post about another death. This one was CF related. I haven't been to the forums a whole lot lately, and I missed how sick he had gotten. He passed last night; I did not know him--but I feel like we were kindred spirits. (I feel like that about every one with CF) Fighting the same fight, just in different ways. I had never really spoken to him; but his wife Lisa is on the CF forums I use for support. I always feel horrible when I see the impact CF has on parents, couples, friends and siblings. It breaks my heart to know that one day my loved ones may feel that same loss. And there is nothing I can do about it. Sure I can take care of myself so that it doesn't happen anytime soon--but really does it matter when you loose a loved one? I don't think so really...
I just feel horrible for the loss that Lisa has experienced and I'm sending her my love and prayers. I'm also hugging my CF family, the ones who had met him and his wife, and the ones who hadn't...and I have a message:

CF may be a tie that binds us...but everyone I have met online and off have been truly wonderful and inspiring. I'm thinking of you all today, and if I'm being honest I think of you all everyday and I'm always wishing you the best. Even if I do not say it often.

Long time no update!

2010-10-06T14:50:00.004-04:00

So it's been a while since my last post, and honestly I think it was a good idea to take a break. I was getting sick of complaining and I'm sure those who read this were sick of reading!
So I do have some good news and some bad. The good news is that my PFTs have gone up! That was a nice surprize being that I'm not able to exercise much due to my muscles. Now the bad news. I have no health insurence. While on the CF front it makes no difference, it does for everything else. I just broke down and had my lyrica prescription called in. My cost is somewhere around $195, which is better than the $300 I was quoted earlier. But it is still not something I can afford. So I'm stuck here trying to figure out what I can do. I'll figure it out though and it will be fine. I'm going to start being optimistic again.

So my daughter started the ninth grade this year, and we got progress reports last week. She has A's in all of her classes! I am so proud of her. Also she has been cooking dinner a lot, to get expirience with different techniques and such. I'm hoping that next summer we will be able to put her in culinary camp again, I know she really likes it there!

Things are going pretty well here, and the things that aren't going well I'm working on solutions for! Life is too short for me to complain and sit around hoping things get better. It's time to get up and start doing more about it.

Angry...

2010-07-18T14:14:00.006-04:00

So I've been in a really bad mood this weekend. I'm not sure why, there are many things this week that could have done it. Monday - Friday my daughter had a culinary camp and I drove her there every day. I was exhausted every night and am still sore from the driving. In addition to that my car broke down, I don't drive so I have been letting someone else drive it with the agreement that he would be responsible for gas and maintenance...well it's going to be a $300 - $400 fix the he can not afford. We can not afford it either. Also I was looking at some pictures of myself and I look sick. My mom showed me an obit in her local paper for a young lady with CF; and I drove my mother to work (where my Grandmother passed away).

I like to keep this picture up, you know, that things are good. Sometimes they aren't and I hate advertising it. No lectures please.

The weekend has just been blah for me. While I can list many things that happened to possibly cause I have no clue if it was one or all of them. Last weekend was my husbands 20th high school reunion; which went well, I thought. Although the walking was killer. So it is safe to say that right now...I am really exhausted. Frank and Kate have been very good about taking care of me this weekend, and I appreciate them for it. I still want to scream...Where did my health go? CF wise I am doing well
but my muscles and joints are awful. My mitochondrial disease is progressing, or at least I am developing new symptoms. Toes going numb, joints locking up, and joint pain in general are new symptoms. (started in the past few months) What sucks is that I'm not sure if or when these symptoms will get worse. And I'm just really pissed about it.

short update

2010-07-02T10:43:00.002-04:00

Since my last update my beautiful daughter just turned 14. I can't believe I am old enough to have a teenage daughter! We had an awesome birthday part for her, thanks again to Fran! I had been telling Frank that I want to celebrate every year because you never know what will happen from year to year, and with my progressive mitochondrial disease I never know when I'll reach the point where I can't do it anymore. Well...I have reached that point, or I am incredably close to it. After her party I was so sore, so tired...it's been a week and I'm still feeling it.

I know there is more to being a mom than throwing birthday parties; but I still feel bad. I'm hoping that next year I will be feeling so much better that I can do it; but if not I'm sure I'll come up with something. I hate that I am not the same physically as I was last year. I mean I weigh the same, my PFT's are up a little bit (which is good) but my stamina is dwindling. It's difficult to explain I guess.

One sided chat

2010-06-11T13:46:00.004-04:00

I haven't updated in while, life just go too crazy. It's getting back to normal so I'll have more time to update. I have been taking online classes to get my Bachelors in Health Care Administration. I only take one class at a time, mainly because I can't really sit for long periods of time. (Or stand either, like I have to shift positions a lot) This last class was a math class and let me just say...I stink at math. I forgot how bad I was at it! I was in the middle of it about a month ago but my Grandmother passed away so I dropped it and restarted a few weeks later.
I am not expecting to use the degree, although its nice to think that by some miracle I'll be able to work again. I have discovered that I love to learn. I am really enjoying being in these classes, meeting people, learning about new concepts. My favorite classes so far were religious traditions one and two; followed closely by pop culture and a few other sociology classes. I like learning what makes a society click. I like learning about what makes the individual tick also. My next class will be Anatomy and Physiology but I am most excited for my human behavior class.

Other than my brain working, not much else seems to be doing what it should! I've been pretty tired lately, but I did a clean out last week and I do feel better. My memory has improved, which is good; and my muscles haven't been hurting as bad, which is awesome. So all in all I'm doing well although I am still dreaming about my Grandmothers last breath (which I was there for) so my sleep habits aren't the best right now. I just hate sleeping and being reminded about it all, in the begining I dreamed about it a lot. I'd even wake up holding my breath, but not so much now. Now my dreams involve her being alive with a few dreams mixed in about that night. So it is getting better I suppose.

The care and feeding of this sick person

2010-03-26T21:45:00.009-04:00

I have been depressed lately because of something that happened recently. So I decided that I needed to write a letter to my friends and family.

Dear friends and family,
This letter is for all of you; but I have two different messages, so there will be two parts. For those of you who support me by sending emails or calling me to check in...for those of you who help raise awareness about cystic fibrosis or walk with me during Great Strides...those of you who fundraise with me or on your own...and the ones who make me laugh when I feel like crying...THANK YOU. I'm not sure if I tell you guys enough; but I appreciate you and your support. It means the world to me and to Frank and Kate. Your encouraging words mean more to me than you know.

For those of you who don't know how to offer support to some one with a disease I have somethings to say. I may not understand what it is like to watch someone you care about get sick over and over, but I do understand what it is like to be that person. Because; I am that person. I need to know that my friends and family have my back. That they are thinking of me, praying for me...I don't expect you to drop everything and focus on me but that you get me. You may not get cystic fibrosis or my mitochondrial disease but that you get *me*. I don't want sympathy; I want a little bit of understanding. I'm about to say things I don't say too often...but I am scared. I'm worried about my future, I'm stressed because I feel like a burden.
I hope I don't sound whiny or needy, but I can only assume since I don't get support from some of you that it is my fault. It is not fair for me to expect you to know what I want or need. So this is me telling you.
-I enjoy spending time with you, I know that you all have busy lives and families. But a phone call or an email is always appreciated. I don't like complaining or dumping my problems on people, but I'll gladly tell you about test results or just talk about the weather. Heck, I'd love to hear about the funny thing that happened on the way to work yesterday.
-I don't want pity, just a little understanding. Have you read about CF? Mitochondrial mutations?
http://www.cff.org/AboutCF/
https://health.google.com/health/ref/Cystic+fibrosis
http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx
When I was 21 an article was written about me:
http://www.ncbi.nlm.nih.gov/pubmed/12400067
(I can even copy the full version if anyone is interested)

-I don't want you to come to the Great Strides walk with your money; I just want to see someone fighting to help cure a disease that will end my life one day. People show up just to walk with Frank, Kate and I.
-I don't want you to come over because I need anything from you, but rather because I *want* to spend time with you. Again; I am about to make reference to something that is not a secret but something that I don't like to think about...
I don't want to die wondering if you knew how I felt or "what if"; I could die before I'm 37. Only 50 percent of us make it farther than that. I know that many of you aren't worried about dying and I probably sound morbid; but the reality is that I am not the healthiest person. Not because I woke up one morning and decided I want to be sick; but because by some cosmic alignment I got CF, two mitochondrial mutations, a thyroid that doesn't work well, and blood that clots fast.

While we are on this subject, I also want to ask you a favor. When you are sick and you need someone to vent too, call me or drop me a line. I can lend a sympathetic ear or maybe give suggestions; but do not tell me that I don't understand. That I just don't get it; because you may not see me wake up in the mornings and cough my head off, many times until I vomit. But I do, You may not see me fall over or run into a wall while I'm trying to walk, and you probably don't have a clue of what is in my medicine cabinet...but trust me...this is real. It is a big deal for me, for my friends and family. Please refrain from telling my husband and daughter that they don't get it either, or that they don't have it tough because they do. More than people realize.

I'm sorry if this sounds selfish or bitchy; that is not my intention. I guess I'm hoping that by admitting to you all that this is what I need; maybe I'll get it from more people. I hope that I offer all of these things, and if I don't...tell me. I will be better.

I'm not speaking for every one with a chronic illness, just for me.

Love,
Chrissy

Just another day...

2010-03-17T12:06:00.004-04:00

I haven't updated recently as we have just been supper busy here. I had an NIH appointment, which went well. My FEV was 82% (up from 79%)! I got all my meds refilled and had some bloodwork done. On the muscle front things seems to be getting achey again and weak; just like before. BUT I'm just taking it one day at a time!

A few weeks ago a friend of mine had a Cystic Fibrosis Fundraiser, I was a speaker. I took the time to go over a list of people with CF who had died recently and all of their ages. It's tough when you go over the list, I started crying while reading them. Only a handful were older than me. The sad fact is that the median life expectancy is 37.4 (as of 2008). I usually don't focus on that myself; but it is always in the back of my mind. When I fundraise or try to spread awareness I always add it in and make sure people know it. I want them to know what CF is, what it does and that there is NO CURE. I just want to scream it so that people will donate money to the Cystic Fibrosis Foundation. The foundation supports a lot of research in new medications to help us have a better quality of life and the chance for a cure.

I would be lying if I didn't add in that *I* want a cure. I want to see my daughter graduate and get married... I want the people with CF that I have met online to get better (although a cure would not repair damage already done), I don't want children to suffer...

I have a whole list of other things I want; but a cure, is something patients and families want too. It's what keeps our hope alive.

My Grandmother

2010-02-04T11:01:00.005-05:00

Her name is Elsie; she was born January 22,1920. She had a stroke February 12 2007, and is paralyzed on her right side. She can not eat, she can not swallow, she can not walk, she can not talk...

She married Christian and had a son; my father Chris in January 1944. Christian died in a plane crash when my father was 11. For a year they would not pronounce him dead because they could not find his plane. My Grandmother pushed and pushed and when they finally found the plane (in a lake in Texas) she sued the pants off the airport who let the men take off with out equipment. She remarried years later; a man named Donald.

When I was a little girl, my Great Aunt Aggie moved in with my Grandmother. Aggie was having a tough time taking care of herself, so Grandmommy helpped out.

When my daughter was born, her birthday parties were at my Grandmother's house and we went trick or treating there every year. Even after her stroke we went trick or treating there. I suppose it was part of my inability to let go...

GrandDonald died last February, and she is still stuck in a nursing home. Unable to say good bye or even attend his funeral.

Today, I spoke to a lawyer. She did not want to be kept alive by tubes...so I had to find out what I need to do to help her. She is not getting better. She is in pain. She is miserable. She is dying at a snails pace...

I don't know what will happen next.

I'll be seeing you
In all the old familiar places
That this heart of mine embraces
All day through

In that small cafe
The park across the way
The childrens carosel
The chesnut trees
The wishing well

I'll be seeing you
In every lovely summers day
In everything that's light and gay
I'll always think of you that way

I'll find you in the morning sun
And when the night is new
I'll be looking at the moon
But I'll be seeing you.

http://www.youtube.com/watch?v=ZIGO6mQnLjQ

Just chillin'

2010-01-31T11:36:00.004-05:00

So today I'm just hanging out. I got to sleep in, which was nice. I got some test results the other day and my cholesterol has gone up! Its at 99 which is the highest its been in a while (both numbers); my CK was 860, that is the lowest it has been in years! So although I am still anemic, deficient in Vitamin A, E, and D and am also low on Beta Carotene...I'm happy!
I had been feeling better muscle wise for the past week or so--but didn't know why. Now I do. I have been doing laundry, and dishes with out a problem! I have even been able to drive around with out leg cramps!

New Year!!

2010-01-16T21:08:00.005-05:00

So it is 2010 and I've made a few resolutions this year and I thought I'd share them. Last year I wanted to get closer to my family and friends, I didn't do as well as I had wanted so I extended it! I also added to it in hopes to reconnect with people I knew way back when. This year I also made my awareness resolution, I make it every year in hopes that out of 365 days I can teach at least one person about cystic fibrosis. This year I added to my list:

-Eat healthier. By that I just mean to eat more fresh foods. Cook with fresh ingredients and to buy meat from the butcher at least once a month.

-If you ask me how I'm feeling...I'm going to be truthful. Really. I expect people to be truthful with me, so I should be truthful with them. It is only fair.

-Do what I can. For those of you who know me; you know I'm always trying to do more than I can. I usually end up in pain and many times unable to move...so this year I'm going to be better to myself.

So these are my resolutions for this year; wish me luck!

In the dark and pissed off

2009-12-28T15:03:00.005-05:00

So my GI called this morning my test results are back; and there are still no solid answers. All biopsies came back "within normal limits" except for a polyp removed from my colon. The Dr had called it "benign", and today they called it precancerous. I'm waiting for a call back to find out which one it really is. I always thought they were two different things, but as of right now...I'm not too sure. I'm supposed to get another colonoscopy done in 2014.

As for the biopsies of my small intestines...well they were apparently "within normal limits" also. What does that mean? Apparently they have ruled out Celiacs disease, and are unsure of what could still becausing my malabsorbtion. At this point the doctors want to do a few more tests and continue with IV therapy. I can't do it anymore. I'm out of money and short on hope these days. Before I was diagnosed with cystic fibrosis I was frustraited, I was sick and I had no reason for it all. When I was diagnosed I was relieved to have an answer. Now I feel as if I am going through it all again, only this time I get to drag my husband and daughter down the "unknown" path.

I just feel overwhelmed. I mean why can't they figure out what is going on? When I don't get IVs my CK goes up; when it gets high enough it causes kidney damage. When my vitamins and minerals are low I'm tired, get headaches, muscles cramps, get confused and forgetful...I just sometimes feel as though I am being set up to fail. With the CF I at least know what the possible outcomes can be, with my mitochondrial mutations...I have no clue. I ask if the malabsorbtion has something to do with my "unknown" mutation and I get told, "maybe". Why doesn't anyone care? I thought with a new mutation maybe I'd get some attention for my other problems... HA...
What the hell was I thinking. I'm not upset that they don't give a sh*t about what happens to me; but rather that my husband, daughter, friends and family have to sit there and watch it all. I'm sure they have all at some point questioned the validity of my problems; it's not like I have any answers. Hell even the GOVERNMENT FUNDED hospital isn't interested in figuring me out.

Where are you Christmas??

2009-12-14T13:55:00.002-05:00

I need to get something off my chest, to whine and rant…
All of my life I have had battles with depression, and I have one a few with out medication or counseling. The last Christmas that I had a problem with was right after my Grandmother has a stroke a few years ago; and before that one it was when My Grandfather (on my Mom’s side) was dying of cancer.

This Christmas will be the first with out Grand Donald (on my Dad’s side); we are loosing my Grandmother’s house (she bought it the year I was born); several people from the cystic forums have been sick and we have lost some too. I am still not feeling well; I don’t think I have felt good in a while. Maybe a day or two here and there; but this year has been an eye opener for me. I don’t think my life is worthless or anything and I am not suicidal, but I just can’t get myself out of this funk.

Now Christmas is coming and we are broke; my usual answer to this would be “so what we have each other”. This year…I can’t seem to get it out. It seems to get caught in my throat. I don’t want to be around people, well truthfully I do…I just don’t feel like I’m good company. I have to prepare myself, go over conversation ideas in my head…normal stuff I would have talked about before all of this crap.

On Thursday I go in for my second EGD, and I’m having a difficult time finding someone who wants to go with me. I guess I can understand; who wants to take off work to sit in a waiting room all afternoon and then help a sedated Chrissy into the car? My Dad said he’d take me; but he had a cow when I asked him about it. I need someone who can come back to recovery and listen to what the doctor says because it might be important. So I’m a little concerned about it. Wednesday my piano is being moved from my Grandmothers house to mine. My Aunt is helping to cover the cost, and the rest of the money is coming from our Christmas cash. Frank and Kate knew I’d be devastated if I lost the piano and both thought this was worth it. I love them so much.

Something else...

2009-11-23T10:29:00.003-05:00

Well the title is because I just got a new diagnosis the other day (Friday). First off my doctor gave me hell (in her own way) for skipping IV therapy so much. So I explained to my primary that I have been feeling like crud. I skipped about 3 weeks and my CK went up to just over 2200; and after getting lipids for a week it was down to just over 1500. She asked what was going on so I told her all my symptoms as of late; and she said "Hmmmm". (LOL)

She called the nurse in and had me lie down. She took me blood pressure and pulse; she had me sit up and she took BP and pulse again; and finally she had me stand and got the info. The nurse helped me sit back down and left the room to go talk to the doctor.

In comes the doctor and she is talking, but honestly my head was pounding and I couldn't pay attention. Really all I could make out was "you have POTS Chrissy" and "new medicine to help".

So I came home and looked it up...
What is Postural Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .
(taken from http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm)
And...
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
(http://www.dinet.org/pots_an_overview.htm)

So...that explains a lot for me! December 1st I have a colonoscopy and endoscopy scheduled. I'm a little worried but they say it will help my digestive problems be diagnosed. My problems are too different from "standard" (their words not mine) CF digestive problems; and with my mitochondrial disease...well they just don't know. So getting these tests done will help figure out the puzzel that I am! (HA!)

Litany...

2009-11-05T10:10:00.004-05:00

So I haven't blogged in a while. I'll be honest as to why...I did get some questions (Like I had asked for) but I just never felt quite up to writing/typing a whole blog. My muscles have been really sore and my joints achy too. I have had off and on fevers and just feeling less than 90%. I didn't want to get on here and complain. Well today I snapped out of my unwillingness to communicate. I hate telling people I'm sick, scared or hurt. I do it but usually not until I am pushed over an invisible line that I have drawn in the sand. Well...I'm going to try to change. I can say "I don't feel well", "I'm sore", or "I'm sick" with out counding whiney...I'm just going to have to practice at it. This entry will be my first shot.

I don't like to constantly complain because I feel like I could be doing so much worse. And honestly, complaining does not help me to feel better. However, for those who read this...I don't feel well. I'm not deathly ill or anything and I don't have H1N1 (knock on wood); its the same old same old. I am super tired, lacking energy, forgetful, achy and sad. All of these things can be attributed to my inablility to digest and absorb, except for the sad part. I am sad because I'm sick all the time (it feels like it) but mainly because I can do nothing for the people suffering around me. So I'm going to do what I can, which is pray.

Most of you know I am a spiritual person so praying is something I think I might be good at!
I have been praying for peace and healing for sometime. As a matter of fact I have a list so far it includes:
Scott's Dad, RR, Lauren and her family, Ginger and her family, my Grandmother, Chel, Deborah and her children, Jessica and her Dad, my brother Pete, Piper...and several others.

But I want to ask you who read this to give me names too, I want to gather a litany of them! I know there are people out there who need prayers, and you'll be helping me to feel somewhat useful durring this down swing of mine. So just leave a post on here whether you know me, or you just happened on my blog...whatever reason...tell me who and why. Those who have passed, those who are healthy but struggeling, anyone you think I might be able to help; if only a little bit.

Boys...

2009-08-26T15:02:00.006-04:00

This post will be about all the boys in my life...
My friend Chris and I talked and I won't be watching Devin on a regular basis for a while. In actuality I think it will be longer than just a while...I didn't do anything wrong but found out from my husband that he talked with Chris about me watching Devin. I didn't get upset like he thought I would, he was worried about me and I guess he told Chris about it. I don't know how I really feel about the whole thing. I miss Devin like crazy; but I know that not watching him has allowed me to rest.
I always worry about what people think of me; you know the stuff they don't say to your face. The last thing I want is for people to feel sorry for me, or pity my life. I say things like "I don't care what so-and-so thinks"...but I do care; if only a little bit. (Not like cry myself to sleep and change my life care...but...enough to put up a front about how I feel) So when Frank sat me down and told me about his talk with Chris and his feelings on me watching Devin, I was a little surprised and hurt. It hurt because I knew he was right. I would have never given up watching the baby if I could help it. Not that I would watch him while contagious or unable to take care of him, and I think (hope) that everyone knows that I would put him before myself. I was actually able to go over to Devin's house to play D & D (Yeah...I play D & D) and I got to hold him and play with him, if only for a little bit. He has gotten so big! And still adorable ;o)!

My sister in law has 3 boys. Nick, Anders and Finn; I used to watch Nick when he was a baby. Nick is close to the same age as my daughter and I really miss having him around. I haven't really gotten the chance to know Anders or Finn that well, and Nick and I have grown apart... Which breaks my heart. He is such a great kid and he is funny, witty and smart. I know he doesn't need me to tell him those things; but I wish I could more often. His Mom is having a birthday party for Anders tonight, and I can't go. I wanted to but I'm not driving myself often because my muscles are so bad, so I need my husband to drive me to these things. Unfortunately he has to work.

I really wanted this year to be the year that I strengthened all of my relationships, however, my body doesn't seem to want to cooperate! I guess since this year isn't over yet I still have time...

For my next blog entry I want to answer questions and say things that I probably should have said already (thanks CG)...so feel free to email me a question or post it on here and next time I'll compile it and answer...

life...

2009-08-26T14:40:00.006-04:00

So since it has been a while since my last blog I'll give you the dirt on what has happened since then!

~ The adoption day came, and despite being emotional it was my husband who told a story that made everyone cry. For once...it wasn't me!!! ;o)

~ My husband and I celebrated our 11th aniversary on the 22nd of August. We went on a weekend trip to Washington DC. Kate came with us, we always celebrate our anniversary with her.

~ My brother Pete turned 28 on the 23rd! He is doing well, I think. I always worry that he isn't. I guess that's the big sister in me. We are having Pete over this coming Friday for a birthday dinner! No matter how old he gets he'll still be my little brother, even if he is taller than me!

~ Kate is getting ready to start school next week and she is really excited about it! She went school shopping with her Nana and she had to get clothing from the juniors section...my little girl isn't so little anymore!

All in all this past week has been good, I had a NIH visit last Wednesday and my PFT's went up to 82% (FEV1) They were very concerned they would continue to trend down because of my inability to exercise lately. YAY!

Adoption...

2009-08-13T14:40:00.003-04:00

So we finally got a court date to finalize the adoption. Monday at 2PM. I know it was short notice, but the court house had a cancelation and I jumped on it. I am half regretting that I di though, because I wanted to share the day with everyone I love. As many friends and family as I could get together. But its not possible on such a short notice. My Dad is probably not going, he has to work. What am I supposed to say? Gee Dad I can't get pregnant and I'm sick...this is like child birth for me; not to mention my only chance. That would just make him feel bad about something he can't change. So I'm just sucking it up.
I guess I'm just worried that when I'm gone Kate will need help remembering the good times when she is sad, same with my husband. I want people to be able to say, "Hey do you remember the adoption?" I guess I'm being silly...

I got my lab work from the 4th of August this past Tuesday. I called my doctors office to discuss the results with my nurse as usual. You know brain storm ideas and new medicines...but instead I got a call saying the doctor wants to speak with me about them. So I had to make an appointment for Friday. We all know what it means when they want to talk with you about it in person. LOL
However; with the adoption being Monday there is nothing she can say to bring me down.

The cold hard truth...

2009-08-06T20:46:00.004-04:00

So tonight I was writing an email to my Aunt Wanda to kinda give her a quick update on my family and stuff. Told her about Kate wearing a size 8 shoe, being 13 and already an inch taller than me, and the parental rights termination hearing....when I realized for the first time...

My Grandmother will not be at the adoption hearing. She won't be able to tell the judge that I am a good mom, that I have been a good mom since day 1...she'll only get to look at pictures. This is something she wanted to see so badly. She and my Grandfather. He passed away earlier this year and I came to terms with the idea that he would never see it. But I had somehow managed to *not* think about how much it meant to me that she wanted to be there; to see it.

So tonight, because this is all I can think about. Because I can't stop crying, and because I love them all I will share a secret. I know what suffering is. It's not what you think...it isn't what I thought...

My Mom's Mom, Grandma--she passed away in 1995. Pre-Kate...I know had she gotten to meet Kate she would have loved her.
My Mom's Dad, Grandfather--passed away when Kate was younger. He and Kate got along great. He started her collecting dolls and coins! Back then we had no idea how badly things would go down hill with Kate's birthmother. I had always wanted to adopt Kate, but her BM was in the picture back then...trying to be Kate's mom...just not trying very hard...
My Dad's Dad, GrandDaddy--I never met him. He died in a plan crash when my dad was a boy. I often wonder if he'd be proud of me, if he would approve of Frank...but I *know* he would have loved Kate.
My Dad's Step Father--GrandDonald--He adored Kate! He was tickled when he heard about the plan for adoption. I only wish this was done sooner for his sake...Kate was devistated when he passed. She missed a whole week of school and we just couldn't believe he was gone. Some days I forget.
My Dad's Mom, Grandmommy--The only Great Grandmother on my side that Kate got to meet. She had a massive stroke a few years ago....the adoption was going to be a surprise but we told her. We wanted her to have something to look forward to. But we know now that she is not coming home. She is paralyzed on her right side, she's unable to speak or eat...
Her husband GrandDonald passed while she was stuck in that nursing home...

You know when I found out about my CF and then about the mitochondrial mutations...when they told me the odds of making it to 4o...with my motor functions in tact...I cried and I couldn't understand why I was the sick one. Why I had to suffer...but life went on. I dealt with it. But when she had the stroke I learned what it was to truly suffer. It is watching someone you love suffer...to watch her try to move---to say something. Anything. Nothing. For the life of me I still can not figure out why this happened to her...

That is why from this night on...I will not cry for what CF or mitochondrial mutations will take from me, but for what they will take from every one I hold dear. Because I know how they feel watching me struggle.

Still thirsty...

2009-08-04T14:10:00.004-04:00

Well today I was finally able to get my IV's again! YAY! As soon as the IV was hooked up and running I totally passed out. I slept hard for the next 4 hours. I wish I could say that I feel great having had them, but I don't. I do feel a little better, but the true test will be my pain levels. They have been off the charts for the last week. My muscles have just been so achey...they were basically being starved with out the IVs. (At least thats what I think was happening) I have IVs again tomorrow and then again on Thursday, so I'm hoping this weekend will be a good one!

Kate has been staying with Frank's parents this week; I miss her terribly, I can't wait for her to come home! I have no clue what I'm going to do when she goes off to college...my plan is to move with her. lol

The IV center drew blood today so I'll be getting my results again. I can't wait to see what they are now. In other news I have a theory about my CK. My doc thinks it is related to my over all cholesterol, but I don't think it is. I've been charting and mapping my results for months and I think it has to do with my HDL (good cholesterol) So I showed my doctor at my appointment yesterday and she agreed there might me something. So it looks like we are going to try to raise my hdl. Obviously we can do it through food or IVs because I don't absorb those well enough. So she wants to try estrogen patches. That's right! My doc said estrogen is a high densitiy lipid protien, so...the plan is to try to sneak it in with the patch...
but shhhh....if my body finds out it may not work. You know it does not like to absorb anything; let alone HEALTHY stuff.

PS-If you want to look back at the test results I have posted...check out the cholesterol, hdl, ldl and CK...you'll see what I'm talking about!!

CF Firsts...

2009-07-29T17:14:00.011-04:00

Alright, so I read two blogs that I have seen this on and thought it would be awesome to share with my friends and family!

My First . . .

Diagnosis- 21 years old. I had a positive sweat test but the doc wanted to be absolutely sure. They called with the blood test results (kinda, they wouldn't tell me over the phone) the day after my wedding.

CF Doctor- The same one since I was diagnosed, Dr. Churnick. Head of the Cystic Fibrosis Clinic in the National Institutes of Health (NIH) in Bethesda, MD

PFT- I'm pretty sure it was before my DX, when I was 16 or so. I did a lot of test in an effort to DX my muscle disease.

Nebulizer treatment- I was young...maybe 9? I was DX'd w/ chronic bronchitis and asthma as a child.

Vest treatment- 27

Dose of Pulmozyme- 27

CF Sibling: None

Non-CF Sibling: Pete; my last entry was all about him!

"Clean out": My first Tune up/Clean out was right after my 30th birthday. My doctor was very happy that I made it to 30 before needing one. My PFTs had droped to 77%, they had always been in the 90's or above. It's ironic because now my base line is low 80s, high 70s...

Bad memories: Vomiting, sitting on the cold bathroom floor in tears alone, because everyone in the house was asleep. I didn't like to wake anyone up, so I sat in there alone--sometimes in the dark so I didn't wake anyone. (This actually happened several times until they figured out a had gall bladder issues/pancreatitis) My mom woke up when she heard the bath water running. It always made the pain better, or maybe it just relaxed me to be in a hot bath. I'd only be in it for 15 or 20 minutes before the pain would come back. Then I'd put my pajama's back on and my mom and dad would drive me into the hospital. They NEVER figured out what the problem was.(until I got away from my pediatric doc and started seeing someone else. She said gall bladder and sent me to the best GI in town, he was amazed I was only 15. The next time this type of thing happened my mom called him at 3 in the morning. He met us at the hospital and told them to check my amylase and lipase levels. The were so high...he stood there with his mouth open staring at me...)

Good memories: Any with my daughter in them!!!

Real Friend- When I was in kindergarten I made my first real friend (non imaginary). Carlolyn Coelho; sadly we have lost touch over the years.

Dose of Tobi- Durring my first tune up I had an IV of Tobi, but I have never had the inhaled Tobi (tobramycin)

Read: "One Fish Two Fish", as a tween it was "Are You There God, It's Me Margaret."

Started thinking about mortality: I think I always thought about it. But I started to think about my own at 15 and was fixated on it for a while.

Started realizing I'm gonna live through this chapter and then the next one too: When I was DX'd at 21, I couldn't see that but gradually afterwards I realized I could make this work. I realized I had to.

First loss: CF related it was a girl I had only made a few comments on her blog and didn't really know. Her name was Debbie, the first CF death that hit me hard...

First time I really remember FEELING sick: It is one of my first memories as a toddler. I guess I was 3 or 4 and I was laying under the Christmas Tree holding my ear. (Ear infection) I recall thinking that Santa was coming and he would made me feel better.

First hemoptysis: Not happened yet

First major bleed (later diagnosed as Pulmonary Endometriosis): None

First home IVs: Never had them, we have an IV center that my primary dr likes to send me to

First home IVs with no hospital time: None yet

First time I freaked out about my fertility: I never had a problem getting pregnant. Just one staying that way. It took 5 miscarriages for the doctors to figure out that I had a blood clotting problem as well, my blood clots too much. At that point I made the decision that with my medical history and terrible genes, and the fact that Kate needed a mother who wasn't going to come and go but one who would stay around...I had a tubal ligation.

First time as public advocate for CF Adult issues: Battle for The Cure, Amtgard. I think I was 24?

First time a relationship changed dramatically during/immediately following big changes in my health: 21, I was DX'd right after my wedding. I told him he could leave since it would only get worse and he said, " Chrissy, don't be stupid." He still tells me that!!

First time without health coverage: I didn't have it when I was a kid which could be why I was DX'd so late. Luckily I am in a life time study for adult CF patients at the NIH, so even if I loose insurance I won't loose NIH. All my meds are free, except for extras from my primary and my GI. My tune up was paid for as well.

First PICC line: Have not had one yet

The First time it hit me: 23
When I was DX'x the only part of CF I understodod was the dying part; then with no time to stop reeling from the news...they told me I had two mitochondrial mutations. After a little while it hit me that I had two progressive disease and I educated myself about them. One effected my lungs and digestive sustem and the other would more than likely take my ability to walk one day and possibly more than that.
I had a choice; I could sit around and be angry and feel sorry for myself or I could teach my daughter and others around me that no matter what the odds are you can deal. These diseases will probably take my life. I know that and I'm OK with it...but no one will say that CF beat me, or that "I lost a battle"...no way.

My Brother...

2009-07-25T23:21:00.006-04:00

His name is Peter James, and he is four years younger than me. He does not have CF, he is just a carrier of the D F 508 gene. He has a few health issues of his own, but all in all he is healthy.

He is sweet and kind, he has a good heart and sense of humor. Pete is a caring guy. He works hard, and when he isn't working he is doing things for our mom and dad.
Pete worries about me a lot; although he won't tell me he does. I know it, I can see it when he looks at me and I can hear it when he talks to me. I can usually tell with most people; a talent I picked up a few years after my diagnosis. He lies about things to protect me, nothing big...all small little white lies or not telling me everything...but I can tell when he does it. Again it's a talent after years of dealing with doctors concerning my unknown mitochondrial mutation an CF. However with him I think I know because, we are connected.

I don't know if he read's my blog...but that's ok. I'm not really writing this for him, or for me. I'm writing this to tell those who read how lucky I am to have him for a brother. Sure he electrocuted me...twice; and yes he flushed my My Little Ponies hair brushes and ribbons down the toilet; no doubt he hit me over the head with a Tonka truck; and he totally hit me in the head with a wrench and a mop too. I can imagine the list of things I did in retaliation or to start the fights were just as rough! HAHA!

He is a great brother, and I could not ask for a better one. No matter what mistakes he has made or will make he will always be my little brother.

I figured that I'd blog about him today because I'm sick of blogging about me! I don't have any news anyway!!

Would I choose CF?

2009-07-24T21:01:00.007-04:00

I read a blog called runsickboyrun.blogspot.com

The question was, "Would you choose CF?" I'm going to post a link to his blog response because it was amazing.

http://runsickboyrun.blogspot.com/2009/07/i-would-choose-cystic-fibrosis.html

Before I was diagnosed I was a different person, I think. The birth of Kate changed me, made me more responsible and made me less bitchy. (LOL) When I finally got the diagnosis; I feel as if I shut myself away. Went into a cocoon so to speak: I picked fights with the people close to me, and I didn't take very good care of myself. I was depressed a lot. It took me a while but when I "emerged" I was different. When I did, I had a respect for everything; nature, life, my family, my friends and myself. I started to be more understanding with people who had different opinions than me, started to pay more attention to the world, and really looked at myself as a person. I became the mother I knew my daughter needed, a better friend...it all made sense to me. I appreciated everyone around me; all the plants and trees--the blue skies and the gray ones as well.

Sure I still have depressed days. Sure some days I wake up and wonder why me...we all do. But would I change my life and give up what I have now to be born healthy? No. I regret nothing. I don't want to go back and change anything. Cystic Fibrosis shaped my personality and life...the crappy part but most importantly all the good parts. I'm still working on me...being compliant... not pushing myself... being a positive influence... taking things at a slower pace...

I guess that this question may depend on the day you ask, because some days I wish I was healthy. Not for me but for all those around me who suffer because of my illnesses. But today is not one of those days.

IV center; here I come!!!

2009-07-24T12:35:00.004-04:00

So yesterday my hubby had his doctors appointment; we have the same doctor so he asked me to go with him. He has trouble with doctor speak...
We are sitting in the room and she comes in. She looks over at me and says, "I can't believe the IV center wants me to admit you." I nod and say "yep. I'm fine with being admitted...I feel like crap." Then my doctor explains that FMH and every hospital have viruses and bacteria that run wild and she doesn't want me exposed to it because my immune system is crap. I mean I know those bugs were there, I'm very aware of the crap floating around at the hospital. But it just never occurred to me that she would be afraid to admit me. I don't know why I didn't think of that reasoning. I feel so dumb! So it looks like I get to spend the next two weeks at home. Resting...Blah...how do I do that!?! LOL (she is in talks with the IV center to get me back in next week, but the isolation would be for my protection...)

Frank got his test results, a prescription, and then was off to Rose Hill for his CT scan. I'm not sure what happened but he went in happy and came out a bear! We think it was some sort of reaction to the contrast dye. Neither of us are sure, but that is the only thing we could think of. When we got home he worked on the website for a bit and then took a 3 hour nap. He was so upset that he was so tired. He wanted to work on Shot stuff all day since he had off to get his scan and see the doctor. But I made him take that nap, I was afraid he'd fall asleep at the computer!

Kate and her friends (Molly and Bethany) are in the other room playing Rock Band. It's nice to have them here; they are good kids. But don't tell them I called them kids. HA HA! I'm trying to convince them to be a chick band. LOL Molly is drumming and Kate is the guitar and Bethany is singing....they aren't half bad.

Tonight I am planning to make a beef roast for dinner. This will be my second attempt at a roast that Frank will like. He is not a beef person, unless it is ground up or chicken fried! He choked on a piece of steak years ago...and it scared him for life.

I'm off to rest...whatever that is...

Well...

2009-07-21T15:01:00.004-04:00

So today I went in for my IV therapy. My doctor told me yesterday I would be fine to go in, although in truth I was not sure. So I did as my doctor advised and went in. They couldn't treat me. They sent me away. Apparently the Frederick Memorial Hospital infectious disease control says I need to be in isolation!

"Before the blisters are crusted over, the virus can be spread to anyone who does not have immunity to chickenpox through vaccination or previous infection. " (http://www.medicinenet.com/shingles-rash/article.htm)

All of my blisters are dried up and scabbed over. They are not oozing, it is covered up on my back and under my arm...out of sight... But the nurses have to do what the FMH infectious disease people say. No matter how dumb. Oh and no one even looked at the rash. Not a soul, so I'm not sure why the conclusion could be made that I would need to be in isolation. But whatever...

They did not give me the name of who it was that said I need isolation. So they sent me to my Dr's office. I go in and my dr is not even there! So I sat and waited...and waited...and then my dr came in and said she would see me. HUH? Just admit me so I can get the IV's!

I'm totally freaked out about what she said yesterday about my immune system. About being at a higher risk for certain things...so why would they make me wait? I'm so upset right now and my pain meds just don't seem to be helping much.

So she says she'll see me. FINE. So I wait and wait....and wait and wait....finally I wrote her a note apologizing for being a problem. I just asked her to call me today and tell me what to do. I would like to be admited so that I can get my IV's as they are uber important right now.
But right now I get the feeling they'll just tell me to rest at home for 2 weeks!!

My doctor always uses the analogy of a car and gas. She says I am the car and right now I'm on E, just barely hanging in. If your car runs on E constantly eventually it starts to cause damage.
The vitamins, minerals and lipids are the gas and it just goes out just as quickly as they put it in.

So what happens when I run out of gas completely?

Say What???

2009-07-20T14:40:00.004-04:00

So last Wednesday I got a rash in the middle of my back. It was a little itchy and sore, but I thought it was poinson ivy. It had little blisters and after 5 days of peroxide and calamine lotion, it was still the same as it was in the begining. So I saw my mom and dad on Sunday and they looked at this rash. They said, "Chrissy that's not poison ivy, you have shingles."
Say what mom and dad? Shingles? Huh?

I know what they are; I just didn't expect that was what I had. So today I went in to see my doctor. She took one look and was like, "yep. That's Shingles." That wasn't all she had to say though. She gave me prescripts for pain and for the virus itself. The whole time she was a FLURRY of activity. Upping my dose of multi vitamins at the IV center, entering things into the computer, asking my what seemed to be random questions...then I recognized a few of them and it dawned on me as she pulled up my blood test results. My vitamin levels have basically gotten so low--I have no ability (or it is a weak one) to fight off infections and such.

She explained to me that her flurry mode was because I can't fight stuff off...my vitamin levels are so low...and then she mentioned the C word...

Say what??

I don't have cancer; but am considered at risk; and if I do develop it...I can't fight it off. I'm not planning on bringing it up to Frank right now. He has a lot on his plate, including his own medical problems...The C word would just scare him like it did me. There is no point in that. I just have to take care of myself...resting, drinking lots of fluids, and not missing IVs.

Labs from 6/30/09

2009-07-14T13:45:00.002-04:00

So I went in for IV therapy today and got my test results from the 30th. I have to laugh now when I get them...I think my body is in a constant state of flux.

Vitamin K went from 3.6 to 3.9; up is good! lol
Morning Glucose was 82
Calcium was 8.9 which is the same as it was before. If it doesn't go down I'm happy.
AST the 23rd it was 120 and on the 30th it was 156...
Gamma GT last time was 86 and on the 30th it was 106
ALT was 110 and went down on the 30th to 103
CK has gone up from 1165 to 1690
Cholesterol has dropped again! This time I am at 73. hdl dropped to 12 and ldl is at 44
Bun/CREA 8.6
Vitamin B12 652.6
Vitamin B2 listed as repeat test needed again?
B6 dropped to 11
Vitamin C is listed at .13
Vitamin E 3.9
Apolipoprotein A1- 77

Oh they have been checking vitamin d too, but since it doesn't come back flagged I hadn't noticed it. Vitamin D 1 is 20 which the lab says is low.

Other than that everything has been going OK. I'm getting better about saying everything is fine, or good...but its been baby steps. I just never think people want to hear me whine. lol
Over the weekend we went to a good bye for now party for my best friend Jessica. Her dad is really sick and she is going to stay with him in Las Vegas. She says she isn't planning to stay...I really hope not. I lost touch with her several years ago; so even if she doesn't come back...I'm not letting that happen again.

On my way home from Iv's I heard a song that makes me think of Frank and how hard it is for him to be married to someone who is sick. It's by Rob Thomas and it's called "Her Diamonds"

http://www.youtube.com/watch?v=anlM631RsoQ

More labs...

2009-07-08T13:58:00.002-04:00

Vitamin K went up from 3.4 to 3.6, which brings me to just above normal
Morning Glucose was 101 this time
Calcium was 8.8 and has gone up slightly to 8.9
AST last time was 181 and the 23rd it was 120
Gamma GT last time was elevated at 92 but has dropped to just above normal range at 86
ALT was 84 which is an improvement from 110.
CK has gone down from 2762 to 1165 on the 23rd
Cholesterol is still 76. hdl went up from 5 to 14 and ldl droped from 56 to 43
Bun/CREA 8.3, down from 10
Vitamin B12 was 625.7
Vitamin B2 listed as repeat test needed.
B6 has continues to trend upwards and was 18 on the 23rd.
Vitamin C was .47 but droped to undetectable again at < .12
Vitamin E 3.8 down from 4.8
Apolipoprotein A1-80

So my cholesterol hasn't improved but it hasn't decreased again, which is good. My CK has dropped but so have vit c and e...

What can I say? Really not much. I am always so freakin' tired now, not that it is new. Thats been going on for a while. I just hate to show it. I don't want my family to remember me as lazy and no fun...lol...I am at least fun!

Really??

2009-06-30T20:16:00.004-04:00

Okie dokie...so for those of you that read my last set of labs; they were from the 9th. I got my results from the 16th today:

Vitamin K was 3.7 which was barely within the normal range listed. These results came back this time at 3.4 just under the normal range.
Morning Glucose was 105 before breakfast and this time it was 135 before breakfast. The 135 came back marked as high this time...not really sure what that means! HA!
Calcium was 8.6 on the 9th; again just above the labs "normal range" and on the 16th it was 8.8
AST last time was 124; well above the normal range of 10-40; and on the 16th it was 181.
Gamma GT last time was elevated at 136 but the 16th it was 92. Which by the way is slightly higher than the normal range. So yay for improvement!
ALT was 124 on the 9th; and this time it was 110. Again yay for improvement!
Alright this is the biggest disappointment for me. My CK level last time was 1516; normal range is 21-232. Elevated yes but two weeks prior to the 1516 it was 2064 or something around there...so it went down; which is good. This number coincides with my muscle pain level and fatigue. So when I say that I pratically burst into tears when I read that the 16th I was at 2762...
It always freaks me out a little to see the numbers; even though I new my pain had gotten worse I casually put it off as pushing myself to hard for Kate's surprise birthday party...guess not, huh?
Next to update on is my second dissappointment. My cholesterol. This time my result is....drum roll please...76! Yep it has droped from 83 to 76...my hdl dropped from17 to a woping 5, while my ldl went from 48 to 56. I started a new medicine that we hoped would help me absorb fat and transport it properly...so far it doesn't seem to be doing much.
Bun/CREA went up from 7.5 up to a 10
Vitamin B12 was 631.8 and has gone up a little to 628.7! (YAY)
Vitamin B62 was a 13.6 on th 16th which has also gone up from 7.8
B6 was < 2 on the 9th but has improved to be a 5. (YAY)
Vitamin C was low but has risen up to be within the normal range at .47...yay!!
Vitamin E has improved to just below the normal range at 4.8
My Apolipoprotein A1-78 went down a litlle bit more to 69

My vitamin levels have all improved a bit...except for my vitamin K; so I'm hoping they continue to trend up. Today I had an appointment with a new GI doctor and he is planning an endoscope and a colonoscopy so that he can biopsy my tissue (Esophagus, intestine and stomach) to attempt to discover what is causing the malabsorbtion. He is also worried about my liver and for the second time in three years someone has thought that I have NASH (Nonalcoholic steatohepatitis).
So he also wants to review all of my liver tests from the last 5 years and he is talking about a liver biopsy...I hope he changes his tune because I do NOT want one of those! LOL
For those who are unsure of NASH check out:
http://www.webmd.com/digestive-disorders/tc/nonalcoholic-steatohepatitis-nash-overview

So for those of you who are wondering how I'm feeling today--I could be better. But I'm not going to complain...
My husband went to his new doctor today too, and he seems to really like her so far. My daughter is planning a camping trip with her brother next week; and she has been supper excited about it! My car blew a tire today, on my way to IV's this morning...But I made it in with out being stranded on the side of the road! So today I am just thankful for the small things!!

Kate...

2009-06-27T11:44:00.002-04:00

HAPPY BIRTHDAY

to my beautiful daughter Kate! She is 13 today!!! She doesn't know it yet but her father and I put a surprise party together. I can't wait!!

Are you kidding me?

2009-06-23T14:12:00.004-04:00

So...today at IV therapy I asked for a copy of my most recent test results. I had blood work done last week, but they say none of it is back yet so I called my primary to see if she has them. I guess I'll save this post until I hear back from her.

Labs from 6/9/09

Vitamin K- 3.7 according to the lab it is barely within normal range (3.5-5.1)
Morning glucose (before breakfast) 105 (not sure if that is good or bad!!)
Calcium-8.6 also told by lab it is just in normal range (8.4-10.2)
AST-124 normal is 10-40
Gamma GT-136 normal is 5-85
ALT-124 normal is 30-65
CK-1516 down from the last number which was like 2064 or something normal is 21-232
(CK is the number associated with my muscle problems. They are almost always checking...I haven't gotten the results from last weeks blood work but am hoping that it is continuing to trend down. ALT AST and the Gamma GT all all something to do with my liver. My numbers have always been a little elevated; they think it has something to do with my CK # being high also...but as with all things Chrissy they just aren't sure.)
Cholesterol- 83 normal is listed as anything below 200. However this # according to my doctors is too low. Go figure. 83 is up from 80 which is what it dipped to last month. Keep in mind that I am receiving IV lipids too raise it.) The breakdown is LDL 48 and HDL is 17 (hdl should be above 40)
BUN/Crea-7.5 normal is 12.5-18.7
Vitamin B12-631.8 normal is 239-931 (YAY)
Vitamin B2-7.8 normal is 6.2-39.0 (this is improved from my last blood work)
B6 <2 normal is 2.1-21.7 ( This one is always a struggle for me to maintain.)
Vitamin C- <.12 normal is .20-1.90 (this result is up from my last test...before it was undetectable)
Vitamin E-3.3 normal is 5.7-19.9
LDH-349 normal is 100-200
Apolipoprotein A1-78 normal is 101-198

So I have been getting IV therapy for months now, and a few weeks ago started going in 3x a week instead of 2. Why am I doing it? Well because if I don't get multivitamins and lipids directly into my blood steam; everyone is scared of what will happen. But really...it isn't making much of a difference. I keep getting my blood work results and hoping; praying that the numbers will be great. They should be...not only do I get IVs but I take a multi vitamin 2x a day extra B6, C, D, E and B complex(100). Can someone please tell me what the hell I'm doing this for? Why can't they just FREAKIN' FIX ME???

I am so sick of feeling like it's not fair for me to ask for others to adjust because I don't feel well...but apparently NO ONE (except my husband and a select few) cares about whether I adjust for them. At least that's how I feel.
Oh...I just got a call from the Dr's office and they are giving me a prescript to try to bump up my vitamin E...

Sorry for those who aren't used to me whining...lol...I do it a lot on my blog on cysticfibrosis.com; or at least I did. My husband says I need to stop telling people I feel fine or ok when they ask how I feel. So here it is guys...for those who want to know how I feel right now, today....like crap. I feel like crap.

It's over

2009-06-20T16:19:00.003-04:00

So for those who read my last blog entry you know that we had court on Thursday. Everything went well, and the birth mother gave up. She was very upset and said that she was doing this for Kate. No matter what hard feelings she may have for us; she put Kate before all of that. It was a great day and afterwards out family and friends went to Cracker Barrel to celebrate it all.
The next step is to wait for 30 days; the amount of time in which the BM could appeal, and then file for the adoption date. We are all so happy...

Also this weekend is my father in-laws birthday and as everyone knows Father's Day. So we have a pretty packed weekend. Kate has been invited to go camping with her brother Jesse and his family on July 4th week end, and I'm excited for her! She has never really been fishing and it sounds like he is going to teach her. It is just awesome that they have connected again, Kate missed him terribly. I'm not sure if my doctor will be ok with me going camping or not, so I guess we'll see...

This past week I started the Carnitor 330 3x a day, so I'm anxious to see if it has helped or looks like it will. I get bloodwork done every Tuesday so hopefully by the end of the week we'll know something!

Something wicked this way comes...

2009-06-12T13:18:00.001-04:00

As most of our friends and family knows this coming week on June 18th at 9 AM we have court. Not just any court date but *the* court date. So here's the scoop:

My husband has a daughter from his first marriage; his daughter (Kate) has lived with him and I since she was 1. The birth mom had sporadic visitation by choice (Not b/c of us or the courts) Right before Kate was to turn 3 the BM picked her up for a visitation. It wasn't the BM's weekend but it was a holiday weekend (Memorial day) and since the BM had canceled the last 2 visits we thought it would be nice for Kate to get to see her. Long story short she didn't bring Kate home. We fought her in court and finally we got Kate back. This time though she had a set visitation schedule. It wasn't a particularly nasty battle in court, but she lied a lot. But Frank and I decided to keep things as civil as possible. She still did not keep her visitation schedule, she always said she was too sick to take care of Kate. (she told us on 3 separate times she was having a hysterectomy and I can't tell you how many times her car broke down) About 6 years ago or so, she stopped calling or attempting to visit Kate. She was just gone and we had no clue where or why.

After she was gone for a few years Kate's sisters father and step-mom got in touch with us. We were thrilled that Kate would get the chance to have a relationship with her sister. From them we discovered our suspicions that the BM had moved to Florida were indeed correct, and that she still maintained visitation with Kate's sister.

Flash forward to last year. The BM started to pull some stunts with the younger sister and her father some what akin to how she played with Kate and us. Kate got really nervous because the BM kept making comments to the younger sister that she would get Kate and Jesse (Kate's older brother w/ different dad) for Christmas. Somehow Tracy got a hold of Kate's email (although admittedly it is not like we were attempting to hide) She sent Kate a forward about God, and then a few days later an invite to be her friend on face-book. Kate was really upset. No personal letters, no attempts to call all of this time finally culminated.
Kate came to my husband and I and told us she wanted me to adopt her. So we got a lawyer and that is what we are doing. The original court date was in May, but the BM showed up and said she doesn't want her parental rights terminated. Um...hello? Where were you when Kate needed help with her homework, or advice about her friends? Where were you when Kate fell off her bike and scraped up her knee? What about when she celebrated her birthdays and Christmas? And now you want to come play mother to MY daughter? No. It doesn't work that way. You don't get to walk away from a 7 year old and come back when when you want. Anyhow she showed up and made no attempt to speak to Kate, or ask to see her or call her...NOTHING. Do I think for one second she's fighting because she loves Kate? Honestly, I don't. I would never tell that to Kate, but she is fighting because she hates me. This is an attempt to hurt my husband and I. Not a mother attempting to gain redemption.

So next week is the second court date (they granted a continuance so that the BM could obtain a lawyer). I'm anxious to get this over with, she is coming up from Florida and assuming she got a lawyer will be there that day. Kate is scared about what the BM may do and has requested support from friends and family.
So please support her with your prayers and thoughts!

Up

2009-06-09T07:19:00.002-04:00

My family and I went to see Up the other night. I won't reveal anything about it for those who want to see it, but...

I cried. Of course all Disney/Pixar movies are like that. This one was different though. This was MY movie. I wish I could explain it but all I can say is that sitting there watching the screen I identified myself with one of the charactors and my husband did the same thing. We didn't even really talk about it until we left the theater. It was just one of those wierd coincidences that happen on occassion I guess.

This morning I am getting ready for a round of IV therapy in Frederick. What I really want to do is to crawl back in bed; but I know the lack of energy is a direct result of no IV's for 2 weeks. Bad Chrissy. *smacks hand*

Other than that, everything here is going well; my daughter Kate is almost out of school. My husband hasn't been feeling well lately, but the doctor prescibed some high blood pressure medicine so hopefully that will help. He has been stressed out lately with work and then more work when he gets home!

Diagnosis

2009-06-07T11:00:00.003-04:00

At the age of 16, we realized that I had a muscle problem. My balance was poor and I was constantly shaking. So I was refered to the National Institute of Health to try to figure it all out. In July of '99 I begged them to give me something to stop my cough before I threw myself infront of a bus (LOL They didn't think it was as funny as I did!) I was getting married and did not want to be coughing while walking down the isle. So... on August 5th, I went to see a Dr to rule out CF. I went in and sat down and she asked about my childhood. Constant ear infections, constant cough, diagnosed with Cronic Bronchitis and asthma...gall bladder out at 16, idiopathic pancreatitis... I remember the dr was nodding with every one of my symptoms. She even asked if anyone had ever thought to check me for CF, my mom was with me and she told the Dr that as a baby she told them I tasted salty when she would kiss my forehead. She told the Dr that my then pediatrician laughed at her. He told her that she was paranoid, because if I had CF I'd be dying. The CF dr looked up from her noting, and told my mother that they know so much more about CF now than in 1977 when I was born. The nurse came in with a watch looking thing. I had to wear it while it calculated the salt in my sweat. So we sat; me, my mom and the Dr, she was now asking my mom about my family history and about siblings. In turn the dr explained that if it was CF (she didn't say if she thought it was or not) my life would have to change. I'd have to take better care of myself, and I would need a huge support system. She explained tune ups and their protocol meds for the adult CF study (if I wanted to be in it) Finally they took the stupid thing off and said I needed some blood work done. My mom asked about the test asnd they told us that it was positive. But the doctor told me nothing was definate until the bloodwork was back. So done to the lab I went, with the promise of a call back.
So home we went! I had to call the DJ about the wedding, not to mention firm up everything else.
August 22, Wedding day!
August 23, That afternoon I got a call that the CF dr left an urgent message for me to call her back. I didn't return her call until the next day which was a monday.
August 24, I called the dr and she said I needed an appointment. I laughed and told her that I knew it must have been positive for them to want another appointment. She didn't deny it. So I made my first CF clinic appointment at NIH and then I hung up to call my parents. My mom and dad were both on the phone and I can't remember what I said....but I'll never forget their reactions...My mom said "no, Chrissy I prayed. It's no. You don't have it. Make them do it again." and my dad just hung up his end of the phone. He couldn't even talk to me. I found out later that it was b/c he was crying (my dad is a private guy), my brother is the same way. My brother talks about CF more now than before. Actually my mom had said that if you had mentioned it before he would just walk away.
I knew August 23rd. I knew it, and that night my new husband held me while I cried. (I was actually relieved to have a name but the tears weren't for me but for Frank and Kate.) I told him he should go. For his and Kate's sake...they didn't need me hanging on. I was sicker than either of us thought I was before we got married. I would hold them back... He brushed the hair out of my face and told me, "Chrissy, don't be stupid." (I was 21; he was 26 and Kate was 2) We told Kate August 24th together. We knew at 2 she wouldn't understand, but now we could atleast give my strange illness a name now. Today at 12 she educates her friends on Cystic Fibrosis. She leads her very own team at our Great Strides, Kate's Krusaders. My two mutations are R347 P and Delta F 508.

I also have two mitochondrial mutations, they were not identified until around the same time I was diagnosed with CF. G15995A in tRNApro and A8326G in tRNAlys are my two mutations, both are rare but one is totally unique to me. Which basically means I'm floating through life with out knowing what could be next!

For those who read this though...don't feel sorry for me. Seriously. I have a great life and the BEST supprt system!

First Post

2009-06-03T12:40:00.001-04:00

So this is my very first post on this blog! I have had quite a few blogs before, but was hoping to make a new one that would reach many. I have several parts of my life that could be a help to other people. I have cystic fibrosis, two mitochondrial mutations, and more importantly I am a wife and a mother!

I was diagnosed when I was 21, years after being misdiagnosed all of the time with chronic bronchitis and asthma. I actually got the call confirming the diagnosis while on my honeymoon with my husband Frank. I'll blog about that diagnosis next time.

Why is the title "The life and times of a mutant"; well my genetics doctor and I joked when my mitochondrial mutations were identified that I was an origonal mutant. So that is where my title name comes from. Both of my mitochondrial mutations are rare, one of them is totally unique to me and has never been seen before. So I really am a mutant, but the X men have not called me yet.